NCRI Consumer Forum Resources

The main purpose of this library is for NCRI Consumer Forum members to access key reference information related to their roles in NCRI activities. It also serves as a platform to showcase consumer involvement in cancer research. Most of the resources have been developed by consumers themselves.


Consumer Role

» CSG Consumer Role Profile (PDF, 2017)

Making the role work: the consumer toolkit and associated resources

» NCRI Value and Impact Measures (PDF, 2017)

» Consumer Involvement Steering Group Remit (PDF, 2017)

» Consumer Forum Group Remit (PDF, 2016)

» Adding Value and Impact- A Toolkit for Consumer Members of CSGs (PDF, 2017)

» PPI – Getting going as a Research Reviewer (PDF, 2013)

» PPI in Research Groups: Guidance for CSG Chairs (PDF, 2010)

» Recruiting Patients to Cancer Trials (PDF, 2012)

» Predicting Success or Failure of Recruitment to Clinical Trials (PDF)

» How to Write a Good Lay Summary (PDF, 2012)

» Opportunities for PPI in Trial Design (PDF, 2013)

» Dissemination Checklist (PDF)

» Impact of Patient, Carer and Public Involvement in Cancer Research (PDF, 2014)

» YouTube video of Simon Rodwell, Skin CSG Consumer speaking taking part in Clinical Trials (YouTube video, 2015)


» NCRI Consumer Mentoring Guidance (PDF, 2016)

» NCRI Consumer Forum Mentorship Survey Summary Report (PDF, 2015)

The Consumer report to CSGs

» CSG Consumer Report Pro-forma (Word, 2015)

» CSG Consumer Report Pro-forma – Worked Example 1 (PDF, 2016)

» CSG Consumer Report Pro-forma – Worked Example 2 (PDF, 2016)

» CSG Meeting Planning and Review Form (PDF)

Meetings and Events

» Consumer Event Claim Request (Word, 2017)

» Consumer Post-Event Report (Word, 2017)

» LSHTM Cancer Survival Group and NCRI Consumer Forum Joint Meeting February 2017 Feedback Summary

» Report on the 2016 NCRI Cancer Conference Bursary Feedback

» NCRI Consumer September 2016 Training Feedback Report

» NCRI Consumer Forum July 2016 Feedback Summary

» NCRI Consumer Forum March 2016 Feedback Summary


The National Cancer Patient Experience Survey (NCPES) is an annual survey commissioned by NHS England, which gives responses from over 68,000 recently treated cancer patients (across types of cancer and groups of patients, both locally and nationally) detailing their experiences of care. The 2012 NCPES introduced questions about research and NCRI consumers helped bring this about. Findings drawn from the NCPES can be found below.

» Keeping-the-Customer-Satisfied-1 (PDF)

» Keeping-the-Customer-Satisfied-2 (PDF)

» Keeping-the-Customer-Satisfied-3 (PDF)

» Keeping-the-Customer-Satisfied-4 (PDF)

» Keeping-the-Customer Satisfied-5 (PDF)

Overview of Recruitment to Trials in England, citing the findings of the NCPES 2012
» Overview from 2012 NCPES (PDF, 2012)

Findings from the 2013 NCPES survey: New data on awareness of research, research conversations and participation
» Access for All? (PDF, 2013)

Findings and Opportunities from NCPES (National Cancer Patient Experience Survey) 2012-14
» 2012-14 NCPES findings for consumers (PDF, 2015)
» Briefing  notes to accompany above slides (PDF, 2015)

Variations in research conversations with patients and potential participants. Results from the 2014 NCPES
» It’s OK to ask – but who doesn’t get asked (PDF, 2013)

Results from the 2014 NCPES
» We need to Talk (PDF, 2014)